New here...Positive Celiac Panel 6yr old. Advice!!

[MommaRN]

Hi everyone. Our whole lives were flipped upside down this month. My 6 yr old son had become progressively sicker and sicker with chronic diarrhea. After back and forth with dr visits and missing a LOT of school, we finally got his celiac panel back very very positive for celiacs. (I don’t have the exact numbers in front of me). He was so weak he couldn’t even walk into get his blood work done, he had to be carried. We are now waiting to see a pediatric GI dr at a large pediatric hospital with a celiac clinic. We have been 100% gluten free for 1 week.

What we’ve noticed:

Significant weight loss, 5 lbs (for a skinny skinny 6 yr old is very significant). He has a distended belly with bony skinny legs and arms now.

Pain in his abdomen that moves quadrants.  so bad at times he can’t stand. This comes and goes. 

Dark rings under eyes. (Always for years)

Now gluten free for 1 week and he is having 1-2 pure liquid, to light colored putred smelling, froathy floating stools a day. Prior to gluten free and when he was so sick he couldn’t stand, he was having 4-6 of these BMs a day.

He vomited after eating (prior to gluten free) on and off for about 1 mo. 

Asthma for 2 years 

headaches

sores in his mouth (like canker sores)

pain in his legs

? Foggy feeling? He’s had trouble learning to read, spell and math. We actually thought he could be dyslexic. But now this is making sense.

sometimes he complains that he tastes a sweet fruity taste in his mouth (anyone ever heard of this?) 

So many things I didn’t realize and am seeing that he has had symptoms for a long time but never put two and two together. It makes me feel horrible he has had to suffer. I’m sure there will be more things that will make sense as we learn.

any advice on our journey? I have two older children and am terrified of cross contamination. I’ve spoken with the school, nurses there, and everyone. I’m considering quitting my job (as a nurse) to be available for him and all the new challenges we will be facing.

please give me some hope of improvement for my angel boy. 

M.

[squirmingitch]

Oh your poor baby!!!! He was a very sick boy! Thank goodness you now know what was causing it. OK, the good news is that he's very young & the young heal & get well so much faster than older people. You do know that all 1st degree relatives should get tested every 2 years in the absence of symptoms or immediately if symptoms present. It's a genetic disease & can present at ANY age.

I will tell you what will make your life so much easier & that is to take the household gluten free. Everyone eats gluten free IN the home. Outside the home, the other kids & adults can eat gluten. This will keep things clean & you won't have to constantly worry about cross contamination. DO read the Newbie 101 thread at the top of the Coping section.

The brain fog is a feature of untreated celiac. It will go away on the gluten-free diet. The headaches will most likely go away as well. That's common with celiacs. The pain in his legs is probably also caused by the celiac. He needs to be tested for vitamin & mineral deficiencies. He undoubtably is low in a few. Celiac causes malabsorption which essentially leads to malnutrition. It surely sounds like you son has moved into the malnutrition arena. That causes all kinds of symptoms. There are actually over 200 symptoms associated with celiac disease. Not that having one of those means one is celiac but they are frequently symptoms experienced by celiacs. I am surprised the pain is only in his legs -- it can be body wide. The sores in his mouth -- the asthma -- it's all familiar. The asthma may or may not clear up completely or it may recede to a certain degree. 

It's just my opinion but I don't think I would quit my job. Actually, you guys have already faced & conquered the challenge. You have the diagnosis & know where to go from here. Celiac disease only requires 1 thing & that is a gluten free diet. He's not an invalid. Celiacs are not invalids; we just have to be careful of what we put in our mouths. We don't require prescription medications, chemo, insulin shots. People can have much worse diseases than celiac. I think you are going to be amazed at how quickly he's going to recover & turn into a normal 6 yr old boy doing everything normal 6 yr old boys do. 

[GFinDC]

Hi,

It's important to keep him eating at least some small amount of gluten daily until all the testing is completed.  The testing usually includes an endoscopy to take 4 to 6 biopsy samples of the small intestine lining.  Those biopsy sample are checked for damage characteristic of celiac disease.

You might find he does better if you take him off dairy for a while. Celiac damage makes it hard to digest dairy sugar (lactose).

Some probiotics may help.  I'd suggest Pepto Bismol for symptoms but they say not to give it to young children.  But he can try peppermint Altoids for bloating .  And also avoid all sugar and carby foods like white rice or white potatoes.  Those tend to cause lots of gas in the gut and that can cause pain.

Edited September 27, 2018 by GFinDC

[MommaRN]

Thank you so much! I don’t know how I could possibly keep him on a little gluten during the testing phase.

When we started this process (before positive blood work), we tried gluten free for about a week and he felt so much better. He ended up eating two things with gluten, a muffin and a cookie, and was so sick he vomited every time something went in his mouth, crying in pain, and the diarrhea was so so so bad. Sooo bad, we almost went to the hospital he was so dehydrated. We got the positive blood work two days later and his ped said to go on100% gluten feee diet and made the referral to a specialist.

He would miss tremendous amounts of school is he had to eat any gluten. I know they need to be on gluten for biopsy but I just can’t fathom doing that to him again. 

 

[cyclinglady]

You have been given some excellent advice.  Even though all celiac testing  does require a patient to be on a full gluten diet, it sounds like your child might be too ill to do this.  In this case, I would need the advice of the PED.  The GI May make take a different route in diagnosing your son.  Most of us shudder at the thought of a gluten challenge because once you go off gluten, going back on for testing can be even be worse.  But everyone reacts differently.  It is one of the reasons why it is hard for doctors to diagnose celiac disease.  

Please consider  getting  the rest of the family tested before altering their diets.    Some celiacs are silent, meaning they have no symptoms.  This is one autoimmune disorder that is definitely genetic.  

Because he is so ill, consider calling and asking if there are any cancellations at the PED GI’s office, if there turns out to be a long wait time for an appointment.  

I hope he feels better soon.  

Edited September 27, 2018 by cyclinglady

[frieze]

get him tested for type one diabetes, ASAP.

[squirmingitch]

9 hours ago, cyclinglady said:

Because he is so ill, consider calling and asking if there are any cancellations at the PED GI’s office, if there turns out to be a long wait time for an appointment.  

 

I agree! Call every single day to ask if there have been any cancellations. Odds are, there will be & you will get him in sooner than originally scheduled.

[GFinDC]

12 hours ago, MommaRN said:

Thank you so much! I don’t know how I could possibly keep him on a little gluten during the testing phase.

When we started this process (before positive blood work), we tried gluten free for about a week and he felt so much better. He ended up eating two things with gluten, a muffin and a cookie, and was so sick he vomited every time something went in his mouth, crying in pain, and the diarrhea was so so so bad. Sooo bad, we almost went to the hospital he was so dehydrated. We got the positive blood work two days later and his ped said to go on100% gluten feee diet and made the referral to a specialist.

He would miss tremendous amounts of school is he had to eat any gluten. I know they need to be on gluten for biopsy but I just can’t fathom doing that to him again. 

 

Ok, if he isn't eating any gluten for the 2 weeks before the endoscopy, there is a chance he won't show a positive result.  So you may as well prepare yourself for that possibility.  Since the PED suggested he go gluten free now, maybe he can assist in getting an immediate GI appointment so the test will be valid?  If not the endoscopy may be a waste of money and time IMHO.

If he is too sick to eat the small amount of gluten needed for the test, then you may have to go without a formal diagnosis.

Edited September 27, 2018 by GFinDC

[squirmingitch]

11 hours ago, GFinDC said:

Ok, if he isn't eating any gluten for the 2 weeks before the endoscopy, there is a chance he won't show a positive result.  So you may as well prepare yourself for that possibility.  Since the PED suggested he go gluten free now, maybe he can assist in getting an immediate GI appointment so the test will be valid?  If not the endoscopy may be a waste of money and time IMHO.

If he is too sick to eat the small amount of gluten needed for the test, then you may have to go without a formal diagnosis.

I agree. This kind of thing happens all the time. The Dr says the patient should go gluten-free immediately but the patient has not yet had an endoscopy & so when they get to the GI, the GI either doesn't know the testing protocols or isn't aware the pt. went gluten-free & the biopsy turns up negative & the GI says the pt does not have celiac essentially reversing the diagnosis of the primary care doctor.

You will say, "oh, but it's only been a week or 2 weeks or 3 weeks". We are telling you this happens all the time.

I am not saying put him back on gluten right this minute but you need to be extremely proactive with the ped GI & make sure everything is understood with no miscommunication.

[MommaRN]

That’s what I’ve read everywhere. I understand he will have to go back on gluten for further testing. I just don’t want to do that until we see the ped GI dr and get instructions. We have no endoscopy scheduled yet. Just an intitial new patient appt. Our appt is in two weeks and I’ve been calling for cancellations. I don’t want to put him back on gluten yet, have him lose more weight, not be able to function at all for another two weeks, til we see the dr, then however long til an endoscopy will be scheduled. He can’t sit in the classroom when he has watery diarrhea every hour and accidents cause he can’t make it in time. He wouldn’t be able to attend school and would get worse and worse. I just cannot do that as a mother. 

I will be proactive, and I will do everything to ensure a diagnosis is made properly and put him back on a gluten diet for testing per the GI recommendations. I just need to do this one step at a time and hope I can get him a little healthier before we go back on gluten. We are starting out very behind the 8 ball, I just want to get him better. 

Thank you for your replies and help. We are working on getting the rest of the family tested now too. 

[GFinDC]

What you need to know is that going back on gluten for a gluten challenge is often worse than not going off it at all.  His symptoms and pain will probably be worse later than they are now.  Many people don't complete the gluten challenge because of this.  So, it isn't something that I would suggest doing later.  Doctors often don't consider this aspect of celiac testing and will tell people to go ahead and go gluten free before testing is completed.  Then people don't get a diagnosis at all because they can't complete the gluten challenge.

If he is really sick then I agree, take him off gluten.  But don't put him back on it for another 10 years or so.  By then he will probably have made enough mistakes and eaten gluten by accident enough times to know how it affects his body.

The other negative thing that sometimes happens when people go back on gluten is they can develop additional food intolerances or even additional AI diseases.  AI diseases like to "cluster" and celiac is associated with many other AI conditions.  It's not worth the risk IMHO to do a gluten challenge.

Just as an example I can't eat nightshades, dairy, soy, carrots, celery, raisins/grapes, coffee.  Probably some others I am forgetting right now.  Some of the forum members have multiple AI conditions.  Thyroid diseases, skin conditions (DH), Sjogrens, arthritis, etc.  People with celiac in the family may have relatives with these AI conditions also.

Other wise it's all a lot of fun! :)

It sounds bad but once a person gets used to eating gluten-free it is not that bad.  We can adjust to lots of things.

Edited September 28, 2018 by GFinDC

[MommaRN]

Thank you for your reply! That all makes complete sense. I guess I’m just scared and nervous right now. I know it will become our new norm and it won’t be that big of a deal, but right now it seems daunting. 

Yes we have many AI diseases in my family and I have Rheumatoid arthritis and Hashimoto’s thyroiditis myself. I was tested for celiac some years ago and do not have it.

[squirmingitch]

 I was tested for celiac some years ago and do not have it.

That does not mean you are clear for life. You will still need to follow the testing protocols just like the rest of the family.

 

 

[squirmingitch]

There is another option for diagnosis with him. It's known as the 4 out of 5 rule. This most commonly comes into play when the patient is unable or unwilling to undergo or complete a gluten challenge & the resulting endoscopy. Here's a link & I would advise you to print it out & take it with you to the GI appt. He/she may not be aware of it so having the verification at hand is a good idea. Dr. Fasano is pretty much THE world expert on celiac disease.

Open Original Shared Link

 

[frieze]

PLEASE, get him tested for type one diabetes, please.  and get yourself retested for celiac.  the tests can turn positive at any time, and you need the complete panel.

[ch88]

Another thing to consider is that a lot of people with celiac disease also have other food sensitivities. An intolerance to dairy or other types of grain is common. Once the body has healed these foods can often be introduced back into the diet.  A whole foods diet, with lots of fruit and vegetables probably will help with recovery. Legumes can cause digestive problems and probably should be excluded. 

Some foods are more likely to cause an immune reaction than other foods. You can google the top ten common food allergies.